Autism Spectrum Disorder- Helena and Kyan’s Story
April is World Autism Month, throughout the month, the focus is on sharing stories and providing opportunities to increase understanding and acceptance of people with autism—fostering worldwide support. Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder generally manifesting in the first few years of life and persist into adolescence and adulthood. A person with ASD normally faces persistent challenges in social interaction, speech and nonverbal communication, and restricted, repetitive patterns of behaviour, interests, and activities. The effects of ASD and the severity of symptoms are different in each person.
Cosmocreole shares Helena Sims’ story, a single full time working mum whose son Kyan is autistic. Through Helena’s story, we learn about the challenges that both mother and son face daily. It has been and is still a challenging journey, but one that Helena has embraced.
Kyan,Family and Support
Kyan is 11 years old and will be 12 in May this year. I can remember every detail of the day he was born like it happened just yesterday, and I cannot believe that soon this gentle soul will be a teenager! I have a very small family circle and support system—my mother and brother have both moved to the UK but I am fortunate to have the support of my sister who moved back to Seychelles recently. Before the pandemic, Kyan would travel to the UK and spend the summer holidays with my mum. He would have some therapy and specialised treatments while he was there if needed. Unfortunately, he has been unable to make this trip last year and this year is not looking that promising either.
All was not well
When Kyan was about 14-month old I noticed a regression in his progress— overnight he stopped talking and withdrew into his shell. He stopped making eye contact and became very difficult with food. I was certain that something was wrong and expressed my concerns to family and friends. Often, my concerns were dismissed as me being an overly protective mother.
A mother’s gut instinct is very rarely wrong so I took him to the doctor and hearing tests were done on Kyan, as impaired hearing could be why he was not responding and withdrawn. The tests result were perfectly normal and I was told he may be on the spectrum. We needed to wait until after he was three years old to have a proper diagnosis. I started to read a lot and surfed the internet for answers and solutions, and started to apply them.
I discovered that having routines, using very simplified and clear sentence structures, reducing the noise environment around him to keep him calm and being aware of sensory stimulations – lights, sounds, smell, the texture of clothes and bedding were all very important. I was determined to find solutions but when you try to self-diagnose your symptoms using google, the amount of information and theories out there can be quite overwhelming. I was overwhelmed!
The Diagnosis and Acceptance
I decided to stop focusing on the why and shifted my focus on interventions and how I can best help Kyan. I could not change the fact that he will always be on the spectrum but I had to accept it. When Kyan turned three, I took him to the Early Childhood Intervention Centre in English River, Seychelles to be officially diagnosed, unfortunately, they could not diagnose him there. They tried the ADOS test more than three times. The Autism Diagnostic Observation Schedule (ADOS) assessment is designed to assess the social communication, interaction and play of those suspected of having autism.
However, the doctor was ever so supportive and I will be forever grateful for her honesty when she told me they could not diagnose Kyan and wrote a referral so I could have him properly diagnosed overseas if I wished to, which I did. Kyan was diagnosed at the Great Ormond Street Hospital in London, UK, one of the top pediatric hospitals in the world. Although it was very costly, I desperately wanted answers and I was prepared to accept whatever the outcome. I needed to know and was ready to invest for my peace of mind and to carve the right early-childhood intervention for Kyan. His school also needed the diagnosis to better support him.
Kyan was diagnosed with high functioning ASD (on a scale of 1-30, 30 being the highest, Kyan was 26). Most people may think that one would break down in tears when hearing this, for me, I felt a huge weight lift off my shoulders. I finally knew what it was and I could focus on getting him the help he needed. My son is and has always been my pride and joy.
I have learned so much from Kyan. He has probably taught me more than anyone ever has. He has grounded me and made me much more aware of many things I may have taken for granted. I have become more aware of the colours, smells and sounds around me. But more importantly, I have become aware of other people’s behaviour. I can read their expressions and body language, and I can sense what they need or feel without them saying a word. This is from years of experience in raising a non-verbal child. Kyan only started to speak and make sentences when he was 8 years old. Many children on the spectrum are considered to be autistic savants—they often have a photographic memory and their minds are simply amazing. I have learned to embrace these challenges and opportunities and learn new things daily. Kyan, my son never ceased to surprise, challenge and amaze me.
My greatest challenge in all honesty is dealing with the people around me. I have always felt very close to my son and understand his needs. I find however that getting others on board is very demanding and hard. There was very little awareness in Seychelles at the time that Kyan was diagnosed. Not many people understood what we were going through. The need for a constant routine— not change his diet, keep at least three sets of clean spare clothes in this bag in case he spills a drop of water on his shirt—his needs, solutions that sound simple but can be quite challenging if not everyone around us understands them. For the first 8 years of his life, he was my strength and I was his voice. Though I still am now, I raise Kyan as much as I can as a ‘normal’ child and encourage him to express himself; joy, anger, frustration and all. He is doing things for himself; he makes his bed, bathes independently, brushes his teeth and is responsible for packing his bags. He is more independent now.
Autism Seychelles and Seeking Help
I have been advocating for ASD since before Kyan was properly diagnosed. I was part of the initiation to create a support system for parents with children on the spectrum. I have been a board member of pearl Seychelles which is now called Autism Seychelles from day one. Although it has not been an easy journey, I do believe that we have made great strides in raising awareness on ASD in Seychelles. We are also part of the regional autism association. Through this association, parents have a platform to share experiences, techniques and coping mechanisms. It also helps to know that you are not alone. The association has been pushing to have a special needs centre for many years. This dream will soon become a reality and the centre is scheduled to open this year.
To Other Parents Raising an Autistic Child
There is a support system out there. Often it can feel quite overwhelming but there are very simple and small changes you can adopt that will make a big difference. Speaking to other parents can help. Often the biggest challenge with Autism is acceptance—by the parents. The earlier you do this, the sooner you can get intervention that can help your child immensely to integrate into the mainstream educational system and society. You do not have to do it alone.
If you are not Aware of ASD
I would like you to be aware that autistic children are so very gifted and talented. Yes, they may require more time, patience and investments—they are worth it. We need to understand and accept that we cannot keep trying to force and push square blocks into triangular holes. It is important to find alternative ways to teach them — ways that we can highlight, value and make the best use of their gifted talents.